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Daily Mail: Teen POTS Patient--"'I am NOT a drunk"

Messages
15,786
‘By the time I was 16 they started to suggest that it was all psychological and I was putting it on and doing it for attention.

‘They were asking me if I got on with my mum, if I was stressed or there were any other problems in my life - it was very frustrating.

‘I didn’t want to see a psychologist so eventually I did some research myself and came across a charity called STARS - they had loads of information about PoTS and I realised that must be what I had.

‘I asked my doctors if they could refer me to a PoTS clinic in Sheffield - that’s where I finally got an official diagnosis last November.
Typical ... they don't know, so it's psychological, and the person with the illness has to figure it out themselves. How many times do the doctors have to go through this before they get rid of "it's psychological" as the default answer and do some basic investigations instead?
 

Cheesus

Senior Member
Messages
1,292
Location
UK
Typical ... they don't know, so it's psychological, and the person with the illness has to figure it out themselves. How many times do the doctors have to go through this before they get rid of "it's psychological" as the default answer and do some basic investigations instead?

It's the combination of ignorance and arrogance:

I don't know what this is + I know everything about the body = It must be psychological.
 

Cheesus

Senior Member
Messages
1,292
Location
UK
Say what you will about the Daily Mail's politics (and I do say a lot about it, in fact), but they are frequently good when it comes to standing up for medical conditions, and I am often impressed by their reporting of CFS/ME.

And what the hell were people doing leaving a teenage girl lying alone in the middle of the street in winter? I saw something once where a guy went a lay down in the street in rush hour in the middle of London and people were literally stepping over him. He was lying face down right in the centre of the path. What is wrong with people?!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Im impressed with this article. I know what that is like only too well.

Ive a couple of times ended up in big trouble as others thought I was drunk due to the POTS. One time I was trying to get home from a doctors appointment, about to collapse and was staggering everywhere badly about to fall down any moment (while trying to hitchhike home as I could no longer walk properly and had to get home FAST). Of cause no one would stop a car and pick up in that state thou it was in my small country town where people should know that Im no drunk! (I dont even drink).

The other time I ended up in danger due to this issue. A friend had taken me to a parade (this was years ago, he said he'd never take me to another one after the following) .. I'd wanted to be right at the front to sit down on the line at the front but my friend had arrived to pick me up late so we got stuck in the crowd. Of cause I quickly collapsed (its warm in crowds and I cant stand long at all).. then I almost got trampled in the crowd cause I couldnt get up.

People saw I was in danger of being trampled (it was scary being on the ground in a sea of legs and them all around me pushing in on me, nearly treading on me), so while my friend stayed with me trying to stop the crowd crush starting to go on around me.. a couple of strangers went to get the police to try to get me out of the danger. 10-15 mins they came back, they were shocked by what had happened. The police told them they wouldnt come and help me as I must be a drunk!!. (People ended up having to drag me out of there and a shop owner of a quite close by opened his shop up so i could be dragged out of the crowd and safely inside.

Goodness knows what would of happened to me if it wasnt for that store owner opening a shop to get me to a safe place. (I realise nowdays what we should of done was to call for an ambulance to come and get me but we just didnt think that as I collapsed all the time and most know what hospitals can be like when they dont understand an illness. Nowdays I'd just ring an ambulance but its too late now and after that terrible experience my friend will never again probably feel its safe to take me to a parade even in the wheelchair).

I wish I'd put in a complaint over the police over that incident.. I was in danger and left that way!. (So far Ive had two bad incidences with the police and Ive also had bad incident with a security guard who stood on my head with his boot after Id collapsed trying to force me to get up, which I couldnt do). You can get quite abused after a POTS collapse due to people thinking you are drunk or just a trouble maker who's being difficult.
................

You can not trust others to come to your rescue (its why I will NEVER leave my house alone as long as I have POTS and collapse).

I had an incident when I was a teen (and quite pregnant at the time). It was in the city on one of the most main roads at traffic lights at a very busy traffic time.. during broad daylight. A guy in a convertable called me over to ask me for directions, he then got me closer as he said he couldnt hear me. He then suddenly lerched over and grabbed me by the arm and tried to drag me into his car. I started yelling for someone to help me.. the lights changed and to my shock everyone started to drive off going around his car and left me struggling to get away from this guy and people just continued I guess walking down the street, no one came over. I ended up kicking him to get away! Scary.

So dont expect help if you get into trouble as it may not be there even if there are lots of people around.
 
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Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Love it:

article-2622222-1DA25E4800000578-866_634x499.jpg
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Trudie Lobban MBE, Founder and CEO of STARS, said: ‘This case is a classic example of how hugely debilitating PoTS can be.

‘Common symptoms include a racing heart on standing up, palpitations, fainting, dizziness, chest pain and weakness.

‘There is a significant lack of awareness about PoTS among both the public and the medical profession.

‘We often find the disorder is under-recognised by physicians, which can impact on the patient’s quality of life through misdiagnosis or being informed symptoms are “all in their head”.

‘As a consequence, historically many patients with PoTS have been given a diagnosis of ME, anxiety or panic attacks.


‘Despite the lack of awareness, the disorder is quite common. In young women, some estimates put the number of people with the condition higher than one in 100.

‘At STARS our main aim is to raise awareness of PoTS and other disorders which cause unexplained loss of consciousness.

‘Our Heart Rhythm Week, from 2 - 8 June 2014 is our opportunity to focus on a broad range of disorders, like PoTS, which affect a person’s heart rhythm and can cause debilitating symptoms like Paige’s.’


Read more: http://www.dailymail.co.uk/health/a...lapses-30-minutes-standing.html#ixzz31Uo8YIST
Follow us: @MailOnline on Twitter | DailyMail on Facebook
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Im impressed with this article. I know what that is like only too well.



You can not trust others to come to your rescue (its why I will NEVER leave my house alone as long as I have POTS and collapse).

I had an incident when I was a teen (and quite pregnant at the time). It was in the city on one of the most main roads at traffic lights at a very busy traffic time.. during broad daylight. A guy in a convertable called me over to ask me for directions, he then got me closer as he said he couldnt hear me. He then suddenly lerched over and grabbed me by the arm and tried to drag me into his car. I started yelling for someone to help me.. the lights changed and to my shock everyone started to drive off going around his car and left me struggling to get away from this guy and people just continued I guess walking down the street, no one came over. I ended up kicking him to get away! Scary.

So dont expect help if you get into trouble as it may not be there even if there are lots of people around.

terrible for you Tanya - yes the evidence is ther more people around youthe less likely somoeon is to help you !

SO if you do faint from POTS - try do it in a quite street ....lol?

trouble is it is the busy crowded places that are more likely to make you ill

ALly


ALly
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
terrible for you Tanya - yes the evidence is ther more people around youthe less likely somoeon is to help you !

SO if you do faint from POTS - try do it in a quite street ....lol?

trouble is it is the busy crowded places that are more likely to make you ill

ALly


ALly

Unfortunately collapsing in quiet streets in which only the occassional car is driving down doesnt invoke a good response either.

Another time in the city centre, I collapsed on a quiet street on burning pavement one time, only a couple of metres from the phone box I was trying to get to to call for help (this was back when I was still driving but I couldnt get back to my car!).

Fortunately on that occassion I didnt completely pass out or I would of ended up with serious burns or dead as it was that hot pavement really HURT and left me with red marks (it was a very hot day.. I'd had to go out due to an appointment). I ended up managing to roll on the burning payment to the shade area the phone box was giving off. I was there on the ground for a very long time till I was able to pull myself up onto the phone box and finally manage to phone out a call for "HELP!!" (while hanging from the phone ledge about to go down again).

Obviously people driving by will not stop for a collapsed person on a pavement of a bare street on a hot day. Maybe someone would stop if someone was having a seizure? (thou I even doubt that with what Ive seen of people) but not for us.

Back when I was a child and my family did a lot of travelling around Australia, where there was nothing for miles and miles and miles (I think we were going to WA from SA?), I had to get my parents to pull over so I could have a pee in the grass on the roadside There was a bit of an old dead smell and being the curious child I was, well I had to walk over to where the smell was coming from and look (I came from a farm so thought I was about to see a the body of a dead sheep or kangaroo). There was actually a female with long straight blonde hair body in the grass, flesh half gone (her bones were showing throu her face), clothes breaking down to rags.

You know what my parents did when I franically told them what I'd just found and to come and see (I was about 11-12 years old at the time).. they just wanted to get out of there as fast as possible, they wouldnt come and look and wouldnt go to police to report what was obviously a crime which had been there for a while (they said they dont want to be involved.. I argued with them that this must be reported but to no avail). I tried to report this body as an adult but by then couldnt remember what towns this body was between or exactly what road (thou it was the main one). I dare say it would be still there. It haunted me knowing this womans parents would be grieving not knowing what happened to her and not being able to bury her and Im still discusted in my parents act. Its not like they could of been blamed for an old body (well she obviously wasnt old.. I mean body been there for a while).

This is the kind of thing people are like.. they do not like to get involved with anything which may be "trouble".
.......

I think I may due to the amount of collapses Ive had, Im now actually afraid to leave my house alone due to what Ive been throu with these. That girl in that article is soo brave to still be going out alone, knowing she may collapse and be abandoned when really needing help.